biopsy results.

The news is better than it seems at first. The story has a good ending.

Caryn was awakened this morning with a very poor partial delivery of her final biopsy results. Dr. Liu was not with the team on their rounds, and after examining her to see how she was healing, one of the other doctors said as he was walking out the door "Oh, the results were as we expected, it's stage 3". And then walked out the door. So everyone was rather frustrated and angry, since we didn't get to ask any questions, and it seemed like bad news on the surface, since we were hoping it was stage 2, and not in the lymph nodes.

So we had Dr. Liu paged, and she said that she would be by this afternoon and answer our questions. So she says that yes, they determined it is stage 3b. But the lymph nodes they biopsied showed no signs of cancer, and we thought that was what they would use to determine stage 2 vs. 3. Turns out there was a very tiny tumor on the omentum where it was probably touching one of the ovaries. That's the layer of fat underneath the stomach that they removed. So the only place there were tumors were ovaries, uterus, and omentum, all of which were removed. So, they got all of the tumors and there is only microscopic cancer remaining. All of the biopsies they took around her pelvis and abdomen came back negative. There is no cancer in her lymph system.

So, the news is as good as to be expected. It seems the tumors were very contained and localized.

We got a little more information on the chemo, which they hope to start 2 weeks after she comes home from the hospital. But we're focusing on recovery from surgery and getting her feeling better and home right now.

Caryn was very upset after the doctor visit this morning, but is feeling a little better after talking to Dr. Liu. She's been pretty nauseous today, but got the go ahead to eat crackers and clear liquids. She's had about 4 or 5 crackers.

Dr. Rebecca Liu is really wonderful by the way. She gets the thumbs up.

-matt

chicken broth.

Today Caryn, in a lighthearted spirit, asked for stickers. When the surgical team made their rounds, they gave her some long awaited responses to questions. Like can I start some liquid food? "Yes". Do I really need another trip to x-ray? "No". Can I take acidophilus? "Yes". So gleeful was Caryn at the answers, she had everyone on the team line up so she could paste rainbow stickers on each. Quite a site. They don't get this from any other patient! A watermelon lolly pop and two spoons of chicken broth were like heaven.

Hazel's visit was a bright spot today. She was sitting in Caryn's bed, stamping little kitty and flower designs on paper, as well as on hands and almost on the blanket. (Time to change activities). Caryn took a long walk down the hall with Hazel, Bari and Ronnie. Hazel was marching and at one point looked back and said, "Mama, you're not marching!" Caryn picked up her pace. All the while, Hazel was pasting stickers on things and people. Smiles from all corners. The funniest part of Hazel's visit was when we were getting ready to change her diaper. We jokingly said that we should call Caryn's nursing assistant to help. Well, Hazel pushed the call button! We cancelled in a hurry, but told Amy when she walked by. She said we'd have to do that one ourselves!

The evening still holds two more rounds of walking the floor, a shower and painting her toenails yellow! Yellow is to give strength to her third chakra. We are all pleased at the little signs of progress that are finally happening. Right now we want her to get her strength back so we can go home and continue healing from there. We know all your prayers, wishes, thoughts are helping and supporting Caryn and the family.

The Simon Family

this has nothing to do with Caryn's condition:-)
http://www.fart-sounds.net/fart_sound_board.htm

getting better.

Caryn is feeling a little better today. She slept well last night, her pain is down, and they say she might be able to have liquids later today!

She had two Hazel visits yesterday.

That's it for now.

-matt

notes from caryn.

i am touched with a resurgence of love for my husband after reading this last entry. matt, i'm sorry i sometimes need things that aren't natural for you to give. you're paying attention to me and i can tell that you love me.

i have no idea what day it is. i do know that my surgery was scheduled for the 23rd which was a wed and i was suppose to stop eating at noon the day before. it's pretty much been a blur since then.

(this is suppose to be funny) i think i'm still hallucinating even though i'm no longer taking morphine. i know this because i keep opening my eyes to a room full of doctors starring at me and all that's coming out of my mouth is incoherent babble.

and that salve jar thingy was way more funny than matt made it sound. my sister literally held the jar salve out to me, i put my finder in it and then fell asleep.

there are lots of tiny little poop joke moments that are funny or when i'm in a space where my body isn't that uncomfortable i can laugh a little bit. but the reality of what is really going on here is so foreign to me i can't make sense of it.

i have heprin bruises all over the backs of my arms that are dark purple. my surgical incision is insanely painful. it's unfamiliar for me to be physically weak. to me mentally weak is something i understand and that's different.

its really scary to not know enough about what's going on around you to advocate for yourself and do the things you would normally do to help yourself heal.

i'm happy this hospital was here to take the cancer out of my body. but didn't expect to be left with sleepy bowels, bladder and an UTI.

i'm really sad that kate ulllman dropped off home made crackers for me and i can't eat them. i had to watch hazel eat one today. and what about all these delicious broths and juices we had planned jenna?

i'm scared a lot. i feel like i have so much ahead of me and i really thought i'd been through enough for awhile. i still don't understand why this is happening to me. and i have this little girl and she feels like all that matters and i can't be with her. and when i have chemo i definitely can't be with her. i want to live long enough to be a part of her life. i could cry at any moment if i keep thinking about it so i try not to think about it.

i can really feel that there's a lot of love out there for me. keep it shinning i can feel it. it's helping to hold me up.

ps. i want my sister to sleep with me every night.

GI tract gets a makeover.

Caryn has had a bunch of doctors looking at her bowels today! We've got some new ideas on the gas issue from some specialists, and hopefully it will get moving over the next couple days. More walking, more sitting, less morphine, more enemas, a new laying position and possibly some other things if it doesn't resolve. But still agreement that food will not help at all. Nothing by mouth.

She's had a couple of visits, and her mood has been up and down. The discomfort is kind of bad, and she's felt a little hopeless at points, but there's also been periods where she was resting comfortably and more alert, making little jokes, that kind of stuff.

She says the funniest thing that has happened was when Bari held out the salve for her to put on her lips, and Caryn fell asleep with her finger in the jar. Bari had to wake her up to finish.

I think the funniest thing was when she handed me a half-sucked luden's lozenge at 11AM and said she didn't want it anymore. I said "Where did that come from?" and she didn't know, but I found out later that the last time she was given one was when Bari gave her one around 6AM. 5 hours in the mouth!

-matt

more gas.

Apparently gas and distention are very common after abdominal surgery. We're trying to get her up and walk as much as possible, which is supposed to help. She's actually more alert and walking better and farther than before, but she's in quite a bit of discomfort because of the gas. And they're not letting her have anything by mouth at all until her bowels wake up.

So pray for toots.

-matt

gassy

Caryn was a little bloated this morning, so Dr. Liu gave her some stuff to help with that and said she still can't eat anything! But she was able to have a little juice. Hopefully we'll get some food in her soon. An even longer walk this morning, and she is a little more alert. Still has trouble keeping her eyes open.

I've been sleeping at home with Hazel each night while Ronnie and Bari rotate staying at the hospital, and with Stu, Sarah, and my parents in town for the weekend, we've got really good family coverage right now.

Hazel came by for a little visit this morning. She's been a champ, but she let me know this morning that she really wants mama to come home soon.

Doctor hasn't said anything about going home yet, so we'll probably be here another couple days I'm guessing.

-matt

much more alert.

Caryn's port was successfully installed, albeit much later than it was supposed to be. Hospital time! She is back in her room now, and she's had the go ahead to eat liquids and drink as much as she wants, although she only feels like drinking water.

She made her first phone call tonight, to talk to Hazel on the phone, and she is in pretty good spirits and able to hold a conversation.

She told me to say something else, but now I forgot what it is.

-matt

today.

Caryn is much more alert today. She has less pain, is talking more, and walked a lot farther than yesterday. Still not feeling like having any visitors though. Going downstairs to get a port installed soon, looking forward to having that done because Dr. Liu said she could start having fun things after that, like as much water as she wants and tea and maybe some broth. We'll just go slow on that to make sure she can handle it.

Thanks for the flowers, cards, food, and offers of help. We appreciate them all.

-matt

recovering.

Caryn slept most of the morning. She looks a lot better now than she did last night, and is much more alert now, although she keeps drifting off. Dr. Liu stopped by and said everything looked well. Reduced the morphine dose to help her wake up a little, said to keep getting up and walking around, and she probably won't be able to eat broth until tomorrow. Just ice chips right now.

Caryn's sense of humor remains intact. She told us we were mean for getting her up and making her walk, that it 'sucked balls'. I asked her if she had any message for everyone and she said 'ow owee owee ow owee'.

We can feel the energy out there and appreciate it.

-matt

post surgery.

Caryn went through surgery just fine. She had a great team and they took really good care of her. I have not seen her yet, but she is in the recovery room and awake. We spoke to Dr. Liu afterwards, and they did take out her ovaries, uterus, and omentum. There were some small tumors on the back of the uterus, but they could not see any anywhere else. They took swabs all over the place a few lymph nodes. They'll have to biopsy everything before we have final results. The only thing we know for certain right now is that it is ovarian cancer, it's either stage 2c or 3c, and she will need chemo. Full recommendations will come in a week.

Right now we are focused on loving and healing our sweet friend and the best mama in the world from her surgery. One step at a time.

Thank you so much for your love and prayers today. We'll still be needing them over the next few months, and we'll be asking a lot of our friends in the days to come.

Love you all.

-matt

surgery time.

Caryn is getting prepped for surgery right now, it's looking like the surgery will happen at 3pm. We've taken over a section of the family waiting area and are all wearing heart stickers to show we're on Caryn's team.

Sarah

surgery time changed.

Surgery will be at 2 PM on Wednesday.

Please send healing light, body strength, trust & faith with your prayers for Caryn during her surgery.

-matt

surgery scheduled.

We've heard that Caryn's surgery will be at 12:47 PM. We will arrive at 10:30 and get prepped. Surgery should take 1.5-3 hours. Please keep her in your thoughts and prayers during the surgery. I will attempt to post if the time changes at all.

-matt

cold.

The whole family has come down with a cold. Caryn's sleeping it off today. Resting at home by the woodstove.

-matt

beginnings.

Here's what we know so far:

Caryn had been having some bloating and abdominal discomfort, and went to the doctor on Monday. She scheduled an ultrasound, and we found out that she had a large mass on her ovaries. Since then, we've been to see Dr. Rebecca Liu at UofM, who told us that they both need to come out. Surgery is scheduled for Wednesday, and we will find out more after that. Like I said, they will start by removing both ovaries, which will be sent off for biopsy while Caryn is still on the table. If the mass is benign, then nothing else will need to be done. The doctor is fairly concerned about it because of the fluid that is in Caryn's abdomen and her family history of ovarian cancer. If it's cancer, they may remove all or portions of her uterus, lymph nodes in the area, and the omentum, which is a layer of fat underneath the stomach. All these are possible locations for tumors to spread from the ovaries. After surgery, they will also assign a stage (1-4). Right now, they don't know much about it. The doctor said she feels like it's most likely stage 1 or 2 based on the ultrasound and a physical exam. We'll know the results of the surgery immediately afterwards, but the final recommendations for treatment (chemo, etc.) will not be available for a few days. All the tests need to come back, and a board of physicians will look at the results to make any further recommendations for treatment.

Caryn will be in the hospital for 3-5 days, and then home recovering. Any followup treatment will begin 2-8 weeks after surgery, depending on what is found. We ask for your prayers and thoughts of hope at this time. Jessica Lieberman is organizing a meal schedule for once we're home, please contact her if you'd like to get on the list.

Caryn would like you all to know that she is looking forward to her pants fitting properly again soon, it was really freaking her out.

I'll try and post updates when we know any more.

-matt